Old 03-18-2013, 02:10 PM #1 (permalink)
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Default collapsed soft palate

So I went and had my video esophogram today and the SP noted my swallowing muscles look fine, but that my soft palate has nearly collapsed and does not raise up very much at all when i say, "Ahhh." She believes i was mistaking swallowing problems for a collapsed soft palate - as it has interfered with my eating as well. Have no idea how my neurologists missed this, but I imagine its because everyone keeps dismissing me due to my age and rushing me out of their offices. But now I guess I have evidence that something isn't right with my bulbar region.

My tongue is scalloped up both sides nearly the entire length, my tongue continues to twitch, i have body wide fascics, unsteadiness on feet, and my right pinky/ring finger are weaker than the left (pinching/lateral movement). Lips have really started twitching badly over the past 2 weeks. Still have no problem with liquids/ and no noticeable problems with speech.

Looking for PALS experiences with soft palate. Can soft palate collapse be a presenting symptom?

And just because I know its going to be mentioned, yes, I've seen an ENT and there aren't any physical things that can account for my symptoms (tumors, sinus infection etc), and I have read previous threads on soft palates.

I see ALS clinic on wednesday, just seeing if anyone here has had similar experience.

Thank you very much.
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Old 03-18-2013, 03:09 PM #2 (permalink)
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Default Re: collapsed soft palate

Your tongue is scalloped because when your mouth is closed your tongue is resting next to your teeth. Try open your mouth and unclenching your jaws and keeping your tongue away from your teeth for a few minutes. Scallops should go away.
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Old 03-18-2013, 04:20 PM #3 (permalink)
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Default Re: collapsed soft palate

College boy,

Wait until Wednesday.
2 more sleeps.
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Old 03-21-2013, 02:13 PM #4 (permalink)
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Default Re: collapsed soft palate

Please let us know how your visit w/ the clinic went. My thoughts are with you man.

God bless.
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Old 04-07-2013, 11:34 PM #5 (permalink)
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Default Re: collapsed soft palate

Hey - I see you're back on the site tonight.

I'm guessing your appointment went well last month? The ALS doctor said you are fine? Any suggestions as to your symptoms?

You never posted an update, so I assumed that no news is good news.
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Old 04-09-2013, 07:08 PM #6 (permalink)
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Default Re: collapsed soft palate

ALS doctor is monitoring me. Said at this point, still unlikely, but my symptoms were, "noteworthy." They documented weakness in my right pinky finger, with some atrophy on right side of palm (ulnar nerve), and pointed out some more atrophy up by my elbow on the ulnar nerve side. She said it is likely ulnar nerve entrapment, and I hope shes right.

But if you take that, with the body wide fascics, the issues swallowing, balance trouble, twithcing tongue etc...I am still very anxious. I had my second EMG yesterday finally, and they tested my right hand. She stuck the needle in right where the atrophy is so hopefully I will have an answer soon. Maybe NCS will show some sort of carpal tunnel or something. She also looked at my soft pallate and said the elevation on it is fine. Swallow study was normal so im kind of stumped there.

Just over past few days have really noticed some difficulty in speaking. I dont know if its just psychological/anxiety etc. My "P's" especially. Words like People sound like peeble. etc. also Fumbling/stuttering. GODDDDDDDDDDD I hope this isnt ALS. I keep telling myself its super rare and Im way too young. And Thats all i can do for now. EMG should be back in next few days.

Thanks for checking
Evan
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Old 04-09-2013, 08:17 PM #7 (permalink)
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Default Re: collapsed soft palate

Quick question. What does tongue twitching look like to those of you that have it and have MND. When I look at my tongue (at rest), it looks completely still, and then suddenly one small area will sink in and right back out very quickly. looks like rain drops hitting a flat pond. They are very fast, single twitches that hop all over my tongue.

the twitches i get over the rest of my body are multiple twitches in a row. a fluttering sort of sensation. They last in one spot for about 10 seconds, go away, and show up an entirely new spot a few minutes later.

Still have no problem with liquids, but as mentioned, taking is starting to feel funny. Thanks
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Old 04-10-2013, 12:25 AM #8 (permalink)
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Default Re: collapsed soft palate

The tongue twitching on people affected with ALS (specifically, the Bulbar onset) is fairly constant. It looks like if you were constantly shaking a bowl of gelatin.
At least that's the way I've seen it.

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Old 04-15-2013, 05:42 PM #9 (permalink)
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Default Re: collapsed soft palate

That's how my tongue is. Plus my fasiculations are the wildest in the muscles that are completely fibrosed like tendons.
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Old 04-16-2013, 02:11 PM #10 (permalink)
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Default Re: collapsed soft palate

My tongue twitching is not constant. Although you will see a few of them if i hold my mouth open and my tongue still for 10 seconds or so. I've tried to move my tongue ever so slightly in my mouth to see if the twitches are actually just voluntary movements, but I have been unable to recreate any of the twitches I see.

My neuro said the EMG on the right hand was normal via email, but did not give me a write-up nor the NCS results. I would imagine he would have told me if the NCS results were abnormal, so if the EMG is normal and the NCS is normal with documented atrophy and weakness, then what is it? One of those tests would have to be abnormal, right? He said we can discuss everything in my follow up visit on the 25th.

More questions than answers for now, but I guess ALS still not in the picture for the meantime.
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Old 04-16-2013, 02:26 PM #11 (permalink)
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Default Re: collapsed soft palate

You should be happy, don't sound so disappointed! Wait until the 25th and see what the dr says. It could be bfs and that is treatable. be happy, dance a happy dance. I would if I could.
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Old 04-16-2013, 03:06 PM #12 (permalink)
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Default Re: collapsed soft palate

Wait for your Doctor's appointment and stop speculating about what you think or guess you might have. Neither you nor we are experts in Neurology. So, you would be jumping to conclusions that could prove to be wrong.

Don't forget this: " Don't cross the bridge until you come to it".


Regards,


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